January 4, 2007

Parents of a girl who will always be a baby mentally procure medical treatments that permanently limit her size and weight and prevent her from reaching puberty. Here is their blog about it. Here is the BBC.com article that took me to it:

In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.

Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.

"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it...

The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.

"If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity," they said.

"The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

They call her a "pillow angel" because "she is so sweet and stays right where we place her — usually on a pillow."

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine.

The girl in this case is an immobile retard. Nothing the parents want to do will change that, or make life worse for the girl.

So if the parents are totally insane weirdos who want to preserve their little "pillow angel," who cares?

If the girl was mentally healthy, it would be a 100% different story. But she's not. She's a retard.

We as a society want to laud parents who choose to keep retarded children, and then we want to judge them? We want to say it's good you're taking care of your retarded little pillow angel, but it would be bad if you kept her that way? That doesn't make any sense.

What's so great about nature? Nature's what made her an immobile retard (aka: "pillow angel") in the first place. If nature's going to give her bed sores, we're supposed to be down with that? F--- nature.

I can't believe how harsh you two are being!I read the BBC article and thought the parents' decision was extreme, but also thought they made a couple of good points. First, as a smaller person she will be easier to care for--which means she will get better care, especially if her parents predecease her. Second, that not having a sexually-mature body will decrease the chances she'd be sexually molested, again, especially if institutionalized.

I do not think this is analogous to deaf parents wanting a deaf baby. I do think these parents did what they thought best. Would I have done it? I pray to God I never have to find out.

For all intents and purposes this little girl will remain an infant, I wouldn't go so far as to say baby, for her entire life. It seems that there is zero chance of recovery or improvement in her condition (per the family's blog and news reports.)

Does she need periods--is there some grand purpose to her bleeding every month or, God forbid, her being abused resulting in pregnancy? The parents solutions don't prevent abuse but does prevent the possiblity of pregnancy, and associated complications.

If allowed to grow to normal, adult size she faces increased risk of muscle atrophy and bed sores? Ever seen bedsores when they are so deep they go to the bone? Not pretty and not painless. The parents solution goes to prevent this very, very real possiblity.

Further, their solution allows them to keep their daughter at home where she is, from what it looks like, well cared for. This solution allows her to remain part of the family unit which would be lost to her as she grows older and bigger. She will not get the same level of treatment in a nursing home or state school. Have you ever been to a state school? It's horrifying beyond belief.

Clearly, this is an extreme situation and would rarely be appropriate. Here? I see why the parents did what they did and, for what it's worth, I think they made a good decision for her best interests.

CHICAGO (AP) — The power to create “perfect” designer babies looms over the world of prenatal testing. But what if doctors started doing the opposite? Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities — say, deafness or dwarfism — it just means making babies like them. And a recent survey of U.S. clinics that offer embryo screening suggests it’s already happening.Just like me?

"'If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity,' they said."

I wish I could get worked up into a royal snit over this one, but I can't.

I have two retarded brothers. They're fully functional, but life can be very hard with them. I have cared for kids and teens who were far more impaired: immobile, mute, barely interactive.

Would I do this? Probably not. I tend to rely on playing the cards you were dealt, and trying to find some meaning in that.

While this bothers me, I have a hard time being too condemnatory. The lives of caregivers can be very hard, and then you begin to worry that you'll not outlive the disabled one, and what's going to happen to them? Who will care about them? Damn, it's hard. It's so a worry so deep it makes your heart ache.

Pogo, I think we have a lot in common. I have a sister with mental retardation. I have worked six years in community homes for people with developmental disabilities. If you work in the field or have a family member who may one day live in group homes then you hear the horror stories. They aren't common but they aren't vanishingly rare either. It is terribly frightening to consider the day that you will no longer be able to care for your loved one and leave them in the care of the state.

As to the size issue. Often immobile people tend to be overweight. Just a fact of life. Have you ever tried to change the diaper on a 240 pound immobile man? I have, many times, it can be difficult. Even a full grown woman who isn't overweight can be a major chore.

I wouldn't do what these people have done. I find it repulsive and abhorrent. But, I can't find it in my heart to condemn them for it. If you live in this community and see what we have seen their points become very real.

Should the day come that we can cure this little girl's mental deficiencies? Well, by then they'll be able to reverse what her parents are doing to her in their attempt to protect her.

my background is a major reason I could never support pure libertarianism. I can't imagine a world without government help for these people who really, truly can't care for themselves.

What about a world where there are private charities and religious organizations run by decent people to take care of those who can't take care of themselves? Why does this care have to be coerced (ie, from taxpayer money)?

Don't you think there are enough decent people who would willingly take care of the helpless? Or would we start leaving deformed babies and the elderly on the hillside to die, just because there was no tax money to care for them any more?

After my dad died, my mom spent 30 years teaching special needs children, many of whom were retarded and some severely so. While she loved the work, and the children she taught, the day to day challenges were very difficult and many of her stories about the lot of these children were heartrending.

Your comments, Pogo, reminded me of her compassion and empathy for her charges and their parents.

Like Gerald and Pogo, I have first-hand experience with developmentally disabled children and adults. I have a brother with Down syndrome and have worked with developmentally disabled adults with varying functioning levels.

It is far too simplistic to see this as an either-or issue or label it child abuse.

Assuming these parents are sincere, it is not easy to know what the right thing to do is. It is probably difficult to know with certainty whether this child would benefit or suffer by maturing.

The disability rights movement is important and has many benefits. Getting disabled people more rights is often a worthwhile goal. However, at times obtaining rights has no beneficial connection for the disabled individual and may even be harmful.

Within reasonable parameters I think we should let parents judge what will be best for their disabled sons and daughters. They know them best. The article didn't discuss the risks vs. the benefits of the treatment. Assuming no outrageous risks or side affects, it doesn't appear to me this choice should be prevented.

"Don't you think there are enough decent people who would willingly take care of the helpless? Or would we start leaving deformed babies and the elderly on the hillside to die, just because there was no tax money to care for them any more?"

Lest you forget, there was a day that that is precisely was we did. It is all too possible that there will be a day where we return to those ancient practices. It is only because of our amazing wealth and abundance that we care for the developmentally disabled as we do. Those who want to take actions that endanger our economy are putting this populace at risk. I couldn't be a Libertarian, but I also couldn't be a Democrat or anything to the left of centrist.

As to the rest of your comment. . .

The company I worked for a private company and had substantial private donations as well as government funding, but without state money it would have been awful. Even now there is a multi year waiting list to get into group homes, at least in the states I'm aware of. Even now, with state money, there is a lot of need, hardship and difficulty. My mother moved with my sister to a different state recently and has had to get on all the waiting lists yet again.

Talk to me about private charities all you like, but they aren't cutting it right now. How would taking away the government money magically make that change? In fact, the last decade has seen repeated budget cuts for this population in Kansas. I know for a fact that money didn't appear out of thin air to make up the difference. These are the people no one wants to live in their neighborhoods! Take them into a restaurant and outraged people will become angry and complain. And you expect them to give money to care for the developmentally disabled? Yeah, right. Everyone wishes they didn't exist and doesn't want to think about them. There are exceptions, but mostly if you don't have the situation in your own family then you don't give a rat's ass.

Remember, we are not talking about people who are merely mentally ill or even just lazy. These aren't people who could take care of themselves but refuse to. These are people who cannot feed themselves or, often, even bathe themselves. Many I've dealt with cannot even turn over much less dress themselves. I refuse to play games of maybe with these people. I suggest that if you had seen what I have seen then your opinions might change.

You obviously haven't spent a lot of time with the severely retarded and severely disabled.

When you have a family member who is severely disabled as I, Pogo and Gerald do, you wouldn't be so condemning. And how did you come up with the analogy to deaf people?

I would bet you wouldn't be able to spend 1 day caring for my brain damaged 25 going on 1 year old 6 foot 200lb nephew. He is mobile and is destructive to himself (hey, how about a an afternoon trying to stop him from biting bits of my tongue off and playing with the blood? Finger painting anyone?) fast and if I babysit long enough to let my sister take a shower and go to the supermarket, I am counting the minutes until she gets home and pray he doesn't hurt himself, hurt me (he has the strength of a 25 year old man) fill his diaper (or go finger painting with it) before she gets there. My sister is a saint. I pray that he dies before she does (he has many ailments and is on a battery of meds) because he could never get the care he does from her from anyone and I'm sure that's what drives the parents in the story.

You that condemn these parents wouldn't make it through a day with him. I guarantee it. People like you always thing the mentally disabled are like that kid on that tv show a few years back, Corkie. My sister used to joke that Corkie was her "dream child."

As for the "medical advances." Again, if you knew someone like my nephew you would know there is no way for him to cure a brain that is so badly damaged. No miracles are on the horizon with him or Ashley.

Re: "Don't you think there are enough decent people who would willingly take care of the helpless?"

I'm with Gerald and vnjagvet here. (And it does sounds like we've walked down much the same path here.)

There are many beautiful moments in such lives, ones that seem ugly to an outsider, and there's alot of pain. I disagree with these parents, but I cannot hate them. I would do it differently, and hope is an ally, but cruel reality often says 'no' to hope, and the burden is not lifted.

Because the real unspoken fear is that the answer to the question posed here is "No, there aren't enough decent people (or there might not be for my child)." And then what? It's where you think "dammit" Just, you know, dammit.

One day my retarded brother and I went to play in the park, he just a year older than I, and I was in charge (a 4th grader) of keeping an eye on him. My Dad read the paper nearby on a bench. Suddenly, Tom was surrounded by boys yelling at him, ready to fight; he was petrified, still. I didn't know what to do.

My Dad came storming over "Whatthehellisgoingonhere!" The biggest boy, a 7th grader stammered, "He's actin' stupid" I had never seen my Dad enraged before. He spoke slowly: "You have five seconds before I crush your skull with my hands... ONE and the boy ran off, as did the others. Dad was quiet while we walked home, Tom laughed, and I knew then what ferocity lay just beneath a parent's love for his child, and how he'd do anything to help him, protect him.

Only a very young and naive person, who has not lived through the medical advances I have seen in my own 40 years (which is still pretty young nowadays), could say such a stupid thing.

It's my experience that young people overestimate scientific advances. I certainly expect amazing things in the future. But it beggars belief that science will come up with a cure for retardation. The brain is complicated, you can't just "fix" a brain that's missing major parts.

It's unrealistic and even ridiculous to hold out hope for a magic cure for retardation any time soon. It isn't in the works, it isn't going to happen. Too much is missing and can't be replaced.

Even if we could re-engineer someone's brain like that, they wouldn't be the same person. Changes that radical would kill the original and replace them with a new identity. And if all we're going to get as an end result is a new person, what's the big deal? We get new people every day, they're born from wombs, it's less expensive and more natural. And they don't have the baggage of having been a "pillow angel" for many years.

It doesn't solve the problem, I realize, but shouldn't the fact that none of these choices are of any meaningful consequence to the directly affected party, temper the hostility toward her parents, or anybody else?

And if we're going to chastise anybody for not believing in magic, maybe we could start with the people who believe that permanent brain damage will be medically reversible before the hysterectomy is. Or is it only the parents who are morally obligated to believe in magic?

Does she need periods--is there some grand purpose to her bleeding every month or, God forbid, her being abused resulting in pregnancy?

God forbid that parents be allowed to sterlize their own children, simply because they do not want to become grandparents.

This is not a normal case. The fear of sexual abuse for a mentally challenged child or adult is very real and very frightening. I have a cousin who is a little bit off and we are all worried for her and have been since she hit puberty. I think in a case like this sterilization might be a good idea.

The other stuff is really, really hard to stomach, but I'm not going to judge the family.

Put me in the category of understanding why the parents did this. I don't know if I would do this if my kids were similary situated, but I know they're doing the best they can in an impossible situation.

I admire those of you who can speak freely about the reasons you support the parents.

I find using the term "retard" to be offensive. Please do not use it, it demeans people who have birth defects. It is very offensive and inappropriate.

It is interesting that some of the discussants are writing as if they know the internal motivations of the parents and the doctors. How do you know their motivations? Are they your neighbors? Maxine, what do you base your assertion that the parents are experimenting and the doctors are just interested in money on?

It looks like massive projection on your part. But I have been wrong before!

I cannot begin to imagine how heartbreaking it must be for the parents and family of disabled persons. But given the choice between two extremes – a libertarian government that leaves people alone and a welfare state that interferes with every aspect of peoples’ lives, I’d pick the libertarian one, even if I had a disabled person in my family.

England, the Netherlands and Belgium, which are countries that I consider welfare states, have been aborting babies or euthanizing persons for the simple reason that they are disabled. Last year, two English doctors were almost prosecuted -- but then not -- for performing a late-term abortion on a woman carrying a baby with a cleft palate. (http://www.guardian.co.uk/uk_news/story/0,3604,1439312,00.html) Yes, a cleft palate. The mother and the doctors decided that baby was not worthy of life because of a cleft palate.

In February of last year, an English court ruled that doctors could withhold treatment from a brain-damaged toddler against the parents’ wishes. Remember, in England, health care is paid for by the state. (http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2006/02/25/nwyatt25.xml&sSheet=/news/2006/02/25/ixhome.html)

From a story in The Telegraph last year about infant euthanasia in Belgium: The lethal doses of painkillers, which broke Belgian law, were mainly administered to babies less than a week old.

Most were premature babies with severe congenital malformations or handicaps and what was described as a poor quality of life, or very premature babies with severe brain damage.

Four fifths of the doctors who completed an "attitudinal survey" agreed that "the task of the physician sometimes involves the prevention of unnecessary suffering by hastening death". [NB I guess they don't take the Hippocratic Oath over there.]

The report went further than any other study in exposing the degree to which infant euthanasia has become commonplace in the most liberal regions of northern Europe.

In 2002, Belgium legalised euthanasia for adults who are suffering "constant and unbearable physical or psychological pain", and who are sufficiently conscious to make the request to die. Holland passed a similar law in 1995. In neither country is it legal to put infants to death.

But doctors in Holland have led a public campaign in recent years to have the law changed to reflect what they call the reality that paediatricians routinely assist children to die. http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2005/04/09/weuth09.xml&sSheet=/portal/2005/04/09/ixportal.html

From a Weekly Standard column quoting from the Lancet article about the same study:

The very first Belgian euthanasia of a person with multiple sclerosis violated the law; and just as occurs routinely in the Netherlands, the doctor involved faced no consequences. Now Belgium is set to legalize neo-pediatric euthanasia. Two Belgian legislators justify their plan to permit children to ask for their own mercy killing on the basis that young people "have as much right to choose" euthanasia as anyone else. Yet, these same children who are supposedly mature enough to decide to die would be ineligible to obtain a driver's license….

Approximately 21 percent of the infant euthanasia deaths occurred without request or consent of parents. Moreover, since when did parents attain the moral right to have their children killed?http://www.weeklystandard.com/Content/Public/Articles/000/000/004/616jszlg.asp

I’d rather the government not be making decisions about if my life is worthy to be lived. And yes, you might say it’s a stretch to go from the government paying to care for someone to the government killing someone, but something has happened in England, Holland and Belgium. I’ll take my chances with a “less caring” government.

I give only a sliver of understanding to the parents. 98% of me calls this child abuse, eugenics, and short-sightedness. Who knows what advances may come in this girl's lifetime that could improve her mental and physical ability.

I wonder if the parents are seeking Brownie points for not simply “putting her away”? Maybe they could get an authentic Princeton professor to argue for that?

Have we heard from the folks who valiantly oppose clitorectomy for African girls? Or perhaps something about societies who bind girls’ feet or extend their necks or is this considered more like orthodontistry?

I wonder if the parents are seeking Brownie points for not simply “putting her away”? Maybe they could get an authentic Princeton professor to argue for that?

Have we heard from the folks who valiantly oppose clitorectomy for African girls? Or perhaps something about societies who bind girls’ feet or extend their necks or is this considered more like orthodontistry?

Daryl: "You're just playing make believe if you think retards have as much going on inside as the rest of us. A very sanctimonious version of make believe."

Right. Because there's a medical condition called "retard" and that describes fully and accurately everyone who has any sort of brain injury.

But wait!

Daryl: "Of course there are some people with full mental functionality who can't express it. And we need to protect them (because we need to protect people with full mental functionality)."

And you can tell the difference between them how, exactly? From what I can tell, about 80% of these "retards" possess intelligence that in some ways exceeds that of the "non-retards".

I remember one "retarded" kid who spoke three languages fluently, even though his words were imperfectly formed. Do you speak three languages fluently?

One girl I know very well, understands 17 languages. She can't speak at all, her motor control is very poor, though she's not immobile, and she's generally perceived as an idiot. But if you give her a multiple choice quiz in Mongolian (or Swahili or French or Japanese or Danish), she can answer correctly.

But I'm sure it's just sanctimonious make believe designed to--to what, exactly? Make people feel bad about killing "retards"? Shame on me!

I just re read my post from last night and realized I said my nephew bit my tongue. Of course, it's his tongue he likes to bite and then "paint" with the blood.

Pogo - your dad rocks. I wish we could take my nephew places or he could enjoy a park.

Andrew Shimmin says - "And if we're going to chastise anybody for not believing in magic, maybe we could start with the people who believe that permanent brain damage will be medically reversible before the hysterectomy is."

Excellent point! If you believe that medical science will cure mental retardation in the next 20 or 30 years, then surely they would reverse her hysterectomy, etc. Then all will be well with the universe. Then who will we condemn?

Ann, with comment moderation on how can you approve what he is writing here? If he were talking about [insert racial slur] would you approve his comments? I doubt that "Yes, they do. She's a [slur]. She always will be." would be approved by you.

Daryl uses "retard" to remove this girl's humanity, no fuss no muss time for a postnatal abortion.

Sorry, no jovial one-liners when facing absolute bigotry. I thought of posting “Daryl’s right. Kill the retards.” But some viewpoints don’t deserve satire.

I guess mom and pop can also dress her up as a Lawn Gnome in the warm weather of Spring and prop her up in the garden right next to the plastic pink flamingoes and the tire planter with the ferns inside ? OvVey this story is begging to be made into a future SouthPark episode.